georgetown university joseph and rose kennedy institute …

GEORGETOWN UNIVERSITY

Joseph and Rose Kennedy Institute of Ethics

SUBJECT: Nancy Wexler

DATE:

INTERVIEWER: Robert Cook-Deegan

Q: ...on the grounds of the Banbury Center at Cold Spring

Harbor Laboratories, around 1:20 p.m., an interview on the

Human Genome Project. I do have a standard set of

questions. The first one is to ask you kind of the general

context of how you became connected to the Genome Project,

what was the first time you heard about it, and what were

your responses to it the first time you did hear about it?

WEXLER: Hmm.

Q: Well, there's an alternative way to get at that, which

is where would you trace the roots of the Genome Project,

what would you see as the important early events, and how

does that relate to your work? Either one of those.

WEXLER: Well, there are really two things: one is my own

personal involvement with genetic mapping activities that

then became the Human Genome Project; and my awareness of

Nancy Wexler - page 1

the Human Genome Project as an organized entity, which was

rather much later.

I think probably the first thing that crossed my

awareness that using DNA markers was a possible strategy for

finding genes was an incredible letter (which I have to try

to find someday) written by Ray White and Arlene Wyman to

Miss Alice Pratt, who is the head of the Wills Foundation,

which I believe then was the Huntington's Chorea Foundation.

It was an old typewriter that had letters missing and was

truly hand-pecked out. And basically this letter said:

"Using RFLT markers, it will be possible to map the entire

human genome, and this was an avenue for finding the

Huntington's disease gene, so would you please pay Arlene

Wyman's salary?" Alice had sent me this letter with a

little cover note saying, "What do you think?" And I wrote

back and said, "Sounds absolutely megalomanic, but if it's

true, it's spectacular."

I mean, it was just completely out of the blue. I

hadn't been reading in any of this; I didn't know what an

RFLT marker was. I mean, the whole concept was new,

although I had actually participated in traditional genetic

linkage studies. When I was a graduate student in Michigan,

we had families and we got blood samples and did all of that

with Janice Lindstrom and Peggy Vance, who's working on it

at Indiana University.


So the idea of using linkage as a way to find the gene

was something that I was familiar with, but to my knowledge

those markers had been long exhausted. In fact, the

Huntington's Disease Commission had had long conversations

about whether or not it was worth supporting genetic linkage

studies. And I think the feeling was that all of the

markers had been tested and that's all there was to it. We

talked at the time about the venous cell population being

the superb ones for genetic linkage, and it's too bad there

aren't any markers. And that's sort of the way, you know,

it stopped there, and that it would be probably

prohibitively expensive to ever go down there and do a

linkage study.

So suddenly this kind of little bedraggled letter came

across my eyes, and I was stunned and wrote back to her and

said you should find out more about these people. And she

had her coterie of advisors, and she funded our little lab.

And I think she was one of the very first people to ever

fund any work in this area at all. I'm not positive, but I

think that what she helped support was the very first White-

Wyman marker. I'm not even sure that one was actually in

existence, or maybe they had one and they were trying to

make another. And it was very, very early on.

So we were intrigued. And then there was a separate

line through the... Youth Foundation. Allen Tolbert, who

was our scientific advisor and a very good friend of David


House at MIT, called David with the problem: How would you

find an autosomal dominant radon-set disease gene with a

total penetrance? And David scratched his head for about a

millisecond and said, "Use autocol. 2 markers." David was a

strong advocate of not just genome mapping, but specifically

disease genes, and he mapped defined disease genes.

David and Allen organized a workshop for the

foundation, and then a program in 1979 at the NIH to look

more specifically at how one would go about using this

system. The participants were David Botstein, Ray White.

When Ray was U. Mass, David was at MIT. David Houseman,

Rajou Courjelepatie, and, I think, Ken Kidd. And there was

a whole raft of people. Tim Pishop. Jim Guzella wasn't at

the meeting. He was a graduate student at the time in

Houseman's lab, hadn't gotten his Ph.D., was very junior,

you know. Although we have graduate students, he wasn't

there.

And there were huge wars in this workshop about what

was the best strategy. Houseman and Botstein had some

friction between the two of them. There were just like

yelling matches, and people were standing up at the

blackboard and scribbling furiously about how many post-

doctors will it take to map the whole human genome. And

Osmond's strategy was, as you're finding each new marker,

run it through a disease family, because you never know when

you're going to get lucky, so why not test as you go? And


Botstein and White said, first of all, they felt

uncomfortable about making that kind of contract with the

family, because you really couldn't promise anything for a

very long time; and second of all, that make the map first,

then take your map and apply to it to a family with a

disease. And they had very cogent arguments for that. The

only problem was that we were in a hurry to find the disease

genes, so to us Houseman's strategy made more sense, to test

as you go, fish as you go, because if you wait until the map

is made, you may starve. And this way, maybe you'll get

lucky, which we did, of course.

So, in a sense, we from that point funded--"we"

being... foundation--funded a pilot project supporting David

and Jim to start working on transforming cell lines and

actually creating markers to use to look for Huntington's

Disease. The first family was this huge family from Des

Moines, Iowa. They were a part of the Huntington's Disease

laster that the foundation supported. Mike Neely and a

neurologist got this whole team to go out and assess the

family and draw blood, transform them, and they were sent to

David. And that was the first family that Jim actually

began working with.

So, in a pilot way, we started supporting all of these

activities, but we were kind of into the Human Genome

Project before I really thought about it as an organized

effort. I'm trying to think in terms of when... At the


time of the workshop in '79, it was a small "m." It was

mapping the human genome, but it wasn't any Human Genome

Project. And I knew about Sinsheimer, and I knew about the

discussions. We had continuing workshops in the area and

people would talk about all the various discussions.

Again, we had a workshop in January of '84, to try to

figure out how to go from the marker to the gene, and that's

the first time that I met Charlie Cantor. And Charlie was

really was one of my biggest guides in terms of the Human

Genome Project and what it was doing and where it was going.

I moved to New York, to Columbia, in '84, so then I

kept in touch with Charlie and Cassandra. They were

becoming very good friends with Charles DeLisi at that point

and were getting involved with the DOE program. So we would

talk a lot about the DOE and what it was doing and how it

was structuring it.

Either fortunately or unfortunately I wasn't at any of

the various retreats then. I was at the NIH meeting. You

know, it was an advisory committee meeting at the NIH for

James Wyngaarden to give us some advice about whether to go

forward or not. And I remember getting into somewhat of a

disagreement with David Baltimore because he was saying why

should you have all of this? And I said, if we had a book,

we could look up the top of chromosome 4; it would be very

handy. It would be extremely useful to people trying to

find disease genes to have had the map already made.


And it seemed to me, at that discussion, that nobody

was really disagreeing about the science. I mean, even

people who thought that this junk probably was not likely to

teach us anything were not really opposed to wading through

it; they were just opposed to the excess, and it was

basically just a financial question rather than a strategic

or an intellectual question.

It seemed to me that the prospect of knowing ourselves

on that most intimate basis was so appealing and intriguing

that the whole project was just kind of in... So, as soon

as I heard about it, I was very enthusiastic about it.

From the perspective of people with diseases in their

families, it seemed to me a very egalitarian approach, which

is unusual in science; that it generally is that the big

diseases, the "have" diseases, pay for what they want, and

the "have-not" diseases never get what they want, but, in

this respect, the Human Genome Project is finding every gene

out there. And, as Norton Zinder says (and he's probably

right), every gene in an altered state could produce some

kind of a disease or disability, we just don't know yet.

So we'll see how it goes as it emerges, but it's always

appealed to me as a way of enabling all the diseases to be

localized and all the genes to be found, and then each group

is free to do whatever they want in terms of the next step

in developing treatments.


Q: At what point did you get officially attached to the

Genome Project? I know that Jim got you looped, got you put

on the advisory committee. He was very proud of that fact.

And then, almost immediately after that...and I don't know

what the process was and I'd actually appreciate knowing

this, how was it that that decision seems inextricably

linked to the position that you've since assumed, which is

kind of carrying the mantle of all ethical, legal, and

social issues? It was very logical, once you were part of

that advisory committee, because you were the only person

who knew anything about those issues.

WEXLER: You bet!

Q: But explain a little bit about that process and how that

happened.

WEXLER: You want the truth?

Q: Yeah.

WEXLER: As long as I can edit it out afterwards. I don't

really know. Actually, I have Valencia to thank. I think

it was at the reception on the opening night of Valencia. I

mean, I was always very interested in it and I wanted to

know what was going on, and Charlie kept me posted. But at


that conference, and particularly, I think, the first

reception, Jim Watson was there, Jim Wyngaarden was there,

Norton Zinder was there, Charlie was there, and they'd had

somebody just say no. I mean, I think that they had invited

somebody else to be on the group. And I don't know whether

that was the absolute last slot or...I mean, I'm not

positive if--I'm trying to reconstruct it--if this person

had to have said no in order for a slot to be available, or

there would have been a slot anyway. But, as I recollect

it, they had offered the last slot to someone else, and they

thought that that person was going to turn it down, but they

weren't positive, so they couldn't really... But, you know,

as I interpret it, they knew that they had to find somebody

else. They must have known they didn't have any women on

it--I mean, at some point, somebody must have looked at the

cast of characters and said, "Oh, my God." And so, as we

were chatting--and I'm not sure whether it was Wyngaarden or

Watson that really had the idea first, you'd have to ask

either Wyngaarden or Watson or Zinder--but, you know, I

think they must have felt: "We can get two for the price of

one," you know. "We have a woman and we have a consumer,

and we have somebody that's interested in the science and

has been interacting with the scientists and has sympathy

for it." And so they thought: "Well, this is great in terms

of..." I mean, I don't know if they knew me from a hole in

the wall, you know, I think that maybe they just said to


somebody, you know, "Is she going to be awful?" The problem

is that I sort of remember a gleam in someone's eye, but I

can't remember whether it was Watson or Wyngaarden. But it

was basically: "Oh, this is a great way to solve a lot of

our balance problems all in one fell swoop," you know.

Completely okay by me, you know. I mean, any way that

I could get on, fine by me, you know. I was very pleased.

In fact, I had, I think, a one-year term they had started me

out with, which probably was testing to see if I was going

to be total capacity. And then my term was practically

expired before I ever was officially confirmed, and then

they renewed me, thank God.

But then I think also that, at that time, although I

don't know, I think in part it could be connected to the

Valencia meeting, but, sort of in the same timeframe, Jim

began talking about the fact that it was crucial to have

attention to the social issues in addition to the scientific

issues. And I think in part it was an accurate political

perception that you just can't do anything in genetics today

without paying attention to these issues. You're going to

be asked about them chronically, so you might as well just

deal with them upfront. And I don't know that he had really

resolved in his mind exactly how to deal with them, but he

knew that they had to be dealt with.

Then the structure of the advisory committee was such

that almost everybody on the advisory committee took a


working group, chaired a working group. I mean, sometimes

there were a couple, sometimes there was just one person,

but they tried to kind of divvy us up. And so I think he

felt that since I couldn't do any science, and that I was

interested in, you know, sort of the counseling and

psychological issues, and that I had some experience on the

family side, that maybe he would give me that area and, you

know, see what happened.

Q: Now what's happened since then? I mean, what's...

That's something clearly that, I mean, the Huntington's

workshop reports mention these issues well before you even

had a linkage.

WEXLER: That we should be thinking about these kinds of

issues?

Q: Yes.

WEXLER: Well, I think one thing that I felt strongly about

from the beginning was to expand it beyond ethics. There is

too much of a knee-jerk, kind of automaton association of

genetics with ethical problems. And I think ethical

problems are rife through all of medicine; they certainly

are true of genetic research and genetic services. But

there are massive economic, social, psychological, legal,


humanistic...I mean, you name it, you can find some problem

in genetics that will exemplify a difficulty in these areas.

So I thought we needed to take a broader scope.

In fact, if we hadn't, I would have felt exceptionally

uncomfortable chairing that committee, because I'm not an

ethicist. You know, I've never been trained as an ethicist;

I don't know that I think like an ethicist; I don't even

know how ethical a person I am, you know. I'm not expert in

a lot of these areas, but I'm certainly not expert in

ethics. And if they had wanted somebody with expertise in

ethics, then I would have said okay, let me find somebody

else who would essentially chair the committee and I would

be the liaison with the advisory group.

And I had a rather long talk with Elke about what the

purview of the committee would be, and also with Len

Barnhart, who wanted to know... I mean, that was really

novel for the DOE to get involved in this area. So we

talked about the fact that it should deal with the area of

delivery of services, and access to quality of services,

that it should deal with some of the best ways to integrate

new tests into mainstream medicine. We talked about these

kinds of issues even before the working group really had its

first meeting, just in brainstorming with Elke and Jim what

kinds of areas the group wanted to contend with.

The membership of the working group was a kind of

combination of some my suggestions, some of Jim's. I


suggested you; Jim suggested John Beckwith. We spent a lot

of time talking to various people about who should be on it.

I wanted to keep it small, because I felt that we should

start small and have it informal and kind of get a feel for

what we were doing and who we were. You know, acting

together before we had to have the burden of too many

personalities to deal with. And that we never were going to

be representative; if we did that we would be..., you know,

we might as well rent a hall.

The first so-called meeting was getting together in the

lobby of a hotel during a meeting in Washington, D.C. And,

you know, sort of whoever was there we thought if we got

together and said yes, we want to be the committee, and yes,

we want to get together, and that was that.

Q: Do you remember what meeting that was? Victor was

there; Mark Bratsten was there; you were there.

WEXLER: Yes, it was the AAAS... The AMA had financed it;

it was like an educational meeting for the AMA on genetics.

It was one of those kind of command things that Watson sort

of said please be there, and everybody was there, and they

filmed it. It was a weird meeting.

Then we had this first meeting in The Cloisters. It

still was kind of feeling our way, but probably some of the

most crucial issues have been how activist a stance we


wanted to take, how we conceptualized our role as a working

group, whether we were just to stimulate research on the

outside, or whether we had a policy function.

And I must say that I think Elke has really been very

flexible on these issues by and large, that even if we

suggest doing something which is certainly not in the NIH

tradition, that she was supportive of it. I think that by

and large the committee has grown increasingly activist,

increasingly pro-active, and that that has gotten good

press, and that the genome office has been very supportive

of it. You know, the LC's going to be a branch.

And then hiring Eric Jungst was a very major

achievement. Eric came up to talk to me. He'd talked to

Elke and then he came up to visit. And we were trying to

persuade him, you know, "Eric, I mean, anybody can be just

an academic. My God, what are you going to do? Are you

going to smoke a pipe? Are you going to teach all of these

bored kids? Are you going to write endless papers? And

here you could have the ground floor of developing an entire

program that's going to change the world. How could you

even have a choice about this? I mean, there's just

absolutely no option for you."

And Eric has loosened up a whole lot, too, you know. I

mean, he was a lot more kind of stiff and formal and old-

mannish--he's gotten younger. But really I think he's doing

a great job.


Q: My impression, being in some of the same orbits, is that

a lot of your judgments about the size of the group, about

the strategic approach, about how to run the meetings and

handle that, was based on intuitions of what would work. I

somehow get the feeling that what you're doing in the LC

area is based on a template. I don't know whether it's the

HDF template, or the commission template, or what, but give

us a little guide on what it is that you've thought about

when you were thinking through what's the purpose of the

group and how's it going to work. What were some of the

things that you thought about, and what were the things that

you experienced that have worked or not worked?

WEXLER: Well, I think that the initial template was

certainly the foundation template. And I think that's even

true for the commission, because two of the people involved

on the commission were Milton Wexler and Nancy Wexler, so

the foundation had something to do with that. I would say

the original template...you haven't met my father, have you?

Well, my father is a very kind of energetic and kind of

classic man, who sort of takes any dogma and stands it on

its head. And even if something has worked beautifully,

he'll say, "Well, maybe we should stop it, or maybe we

should change it, or maybe we should just turn it around, or

maybe we should do it backwards." He, even at 83,

constantly amazes me, because he thinks more creatively and


originally than anybody I know. And he just doesn't let you

get away with... So when we started the foundation, he

didn't really know what he was doing.

He's an analyst; he treated schizophrenics, and so he

was used to dealing with craziness. He was very

experimental and tried all kinds of things. And basically a

lot of his patients would go live with our family, so we

were kind of used to having a fair amount of craziness.

Then, when I was in high school, he started doing

groups of artists. The artists didn't have any money, so he

saw them for free, but he said, "Look, I can't afford to see

all of you individually for free. I'd go broke because I

would never have any other time. If you would all agree to

come in a group, then I'll see you all for free." So he did

that, and he did that for years and years and years. And

actually the artists' abilities supported our foundation

ever since, with art and all kinds of stuff.

So he kind of got the feel for how you let people free

associate, what happens... And so, when the foundation

started... He's a Ph.D. psychologist, not lab-trained but

always interested in science. And he talked to Seymour

Benzer at Cal Tech, and he talked to Bill Dryer at Cal Tech,

and they all said find the best and brightest young minds.

It doesn't matter if they don't know anything about

Huntington's. Great. They're not locked in these

prejudices or preconceptions about what's going on. But if


they have really super technology for answering the

particular questions, help to get the questions out on the

table, then you can figure out the right strategy... And

you can also recruit people that way, because they'll get

hooked on the questions, and scientists are seduced by

scientific questions that they think they can answer. So

the workshops really started that way.

They started small. They really should be on the order

of fifteen people max., between fifteen and twenty. People

always fell asleep during the slides, and they always woke

up when the slides were over and they could talk to each

other, so then we just said, "Well, let's just... the

slides, to hell with it." So now no slides are permitted;

we never order a projector. We have little pad paper that

people can scrawl all over, and a blackboard, they can write

all over that, and there's just a lot of dialogue and

discussion.

And everybody thinks it's going to be awful and they're

going to just sit there for two days and be miserable, and a

lot of the time someone says, "God, was that fun! I really

had a great time. It was the best meeting I've ever been

to, and it's so much fun." And they start collaborations

and they work with each other, and they sometimes have an

idea for a research project and they apply to us for a

grant.


But, anyway, the whole kind of idea is that I think you

have to kind of create a comfortable environment so people

feel that they can kind of be themselves and not afraid to

be stupid, they're not afraid to say something off the wall,

or being criticized, that they can free associate, that they

can joke around and it's not the end of the world, they

don't have to be so serious.

But, on the other hand, they have some important work

to do. I mean, this is a fatal disease. We always started

every workshop by inviting somebody with Huntington's to

come to the workshop, so that the first part of the workshop

was: This is what a gene looks like in action. Most of the

people were bench people and they'd never seen a disease.

And they were thrown. I mean, they were just undone. And

it's very moving. And so you didn't have to make

pronouncements about it. I mean, it was obvious to people

that this was serious business, but they could still have a

lot of fun.

Allen kind of leads a lot of the workshops, but

basically my role is to kick him under the table, to tell

him to stop talking or to let something go. We sort of do

it together, but people will kind of organize themselves so

that you don't have to be so heavy-handed, or you have to

make sure everybody has a little bit of air time. I mean,

those kinds of just interactive...


The commission had, I think, something like six or

eight or maybe ten working groups. The commissioners met

almost once a month. The working groups met three or four

times each. We had six or seven public hearings, all of

them in the space of maybe a year and a half. I mean, it

was just a massive amount of work. But it was the same kind

of thing, that even the working groups were kind of small,

task oriented.

And I think that what is true of both the foundation

and the commission is that they're goal oriented. And

that's true of LC also. And that's true of the Human Genome

Project. And that certainly is true of NIH, but I think

maybe that its goals are so big it gets too diffused.

We wanted to have, with the commission, respected

product. We had heard all these horror stories about

commissions that ended up on the shelves and nobody paid any

attention to them, nobody read them. You know, they

accomplished absolutely nothing and they took up an enormous

amount of money. So we rewrote the entire commission report

once it was done. We had to sit down and rewrite the entire

thing to make it generic. Everything that we said, it

should be for Huntington's, and we rated neurogenetic and

neurologic and neuropsychiatric diseases. We emphasized the

need for basic research, because we didn't know where the ax

was going to come. We said, in the preface, these are

recommendations not for Huntington's alone, because no


disease stands alone in its needs. We had nineteen

recommendations in all; that was it. Now some of them were

like national health insurance, you know, which is a long

time being realized. And then the ones to the Neurology

Institute were extremely practical, very specific, and every

single one of them was done, you know, in the next couple of

years. Probably because I did them.

Q: That's right.

WEXLER: But still they were capable of being done, you

know. I mean, I think the Epilepsy Commission had something

like a hundred and nineteen. Now, you know, maybe they got

the crucial fifteen or twenty that they needed done anyway.

But, you know, I think psychologically you'd feel better

being able to check them all off than to say, well, we just

[tape ended]

We wanted a product that was useful. We wanted that

commission to serve as a template either for a government-

action program or a private-action program. If the feds

wouldn't do it, then at least we would know what it is that

a group of experts thinks that we should do.

And I think, with LC, one of my night terrors about LC

is that the problems are absolutely horrendous. I mean,

there are huge problems. We're bucking up against major,

major social cataclysms that are already going on in our


society. Now I think that there's a lot of enthusiasm about

dealing with these issues.

And what was interesting to me last night at the New

York Family Science... I mean, there's a lot of public, a

lot of discussion in the audience, people really wanted to

discuss these issues. They said, you know, we should have

public debates, the public should be brought in more, we

need to be better educated about genetics, there really has

not been a real forum for having policy debate about issues

such as these. So I think that there's a hunger, but if

people... accountable for solving all these social ills,

then we're going to be, you know, losers. If people say,

when you... insurance is a huge, huge problem, and, you

know, we have this task force to think about some various

policy options. But there's no way that LC and the Human

Genome Project are going to implement some kind of insurance

reform and get it through. I think what we can try to do is

catalyze a political constituency that could begin to

implement whatever policy changes that LC might make

available to the community. But that's a long task, and

that's not, you know the kind of... If you say what LC's

supposed to do is to be a political action committee, but,

you know. I mean, I think that we need to kind of walk some

line between being activist and being held accountable for

all the failures that we know are going to come because of

the nature of our society.


Q: Actually, you bring two questions to mind. One is a

constituency question. And I wanted to ask that earlier,

and I'll just ask it now, and then I'll ask you the other

one about LC stuff. But, on the constituency question,

what's your sense of what is the constituency for the Genome

Project? And what are the strengths and weaknesses of just

the puerile politics of who supports it, who's against it?

And what's your reading of how that's changed over the last

four or five years? I'm thinking specifically of disease

groups and how that has been shifting around.

WEXLER: Well, because, I mean, I think there's the

scientific constituency, which is, you know, one separate

group. And then the genetic disease constituency is a

natural constituency. But I don't think that they're

onboard yet, and that's something that also worries me. I

think we need to do more of that. They potentially could

be. And every time, I think, someone has gone to their

meetings and explained the project and what it is and what

it can do and what it can't do, then they've been very

enthusiastic, and they say, "Oh, oh, I didn't know that's

what it was. Oh, ah."

But there are still probably too many of them that

either don't know anything about it or see it as a threat to

the NIH funding. The NORD group, which is the National

Organization of... Disorders, was rather opposed to the


Genome Project in the beginning, in fact quite opposed...

They felt that the Genome Project was robbing them of money,

and their money was going into something that they just

didn't understand; it was big science, it was sending people

to the moon. And they could care less about sending people

to the moon, you know, they wanted to cure the diseases that

were killing their daughters. So they did not see that this

was a way to find those specific diseases that plague all of

them.

I think there are a couple of things that have changed.

One is that, as there has been an increasing emphasis on

mapping, there has been an increasing emphasis within the

genome program on mentioning specific human diseases, that

the rhetoric of the program in general has become more

disease oriented, and they're not so scared of it. I think,

in the beginning, there was a concern that everybody would

just map their own disease gene, and they would take, you

know, money to do it, and they wouldn't make the map. And

so the Genome Office bent over backwards to talk about

mapping, as opposed to finding disease genes.

They realized that actually there were some genuine

mappers out there that were interested in making the maps,

that would stick to it, and that even the disease hunters

would do their portion of the map. You know, in order to do

what they want, they'd still be willing to play the game and


they would give back a product that was needed. So that was

one realization.

The second realization was that the disease community

was a real constituency, and was a constituency that they

needed in order to stay in business, so they'd better

mention disease genes because really that's what it's all

about, is improving human health.

So I think as more of the genetic disease groups, the

genetic counseling groups that interact with people with

genetic diseases, have become onboard more and are more

familiar with the project, there's more support of it. But

still I think there are many disease groups that don't have

a clue what it is. And I think LC should be more involved

in having meetings with the disease groups, and bring them

in and explain to them what it is and what it does, and hear

from them what their concerns are about it.

So I would say the genetic disease group, known, is the

first constituency; the genetic group, unknown, is the

second constituency in really the general public.

Q: There was a second set of questions that was kind of

implicit in what you were talking about. You raised one

question of being held accountable for changing the world

when so many of the issues connected to genetics touch on

much broader things of discrimination and insurance and all

that. There was another thing I wanted to get your comments


on, which is that this is a frontier effort, in a sense,

this is the first time that there's been such an explicit

and tangible connection between a research program and an

inspection of its impacts. That introduces the new tension

that you're talking about, which is concern for being held

accountable on the social side for making the world a fairer

and better place. There's also something you haven't talked

about, which is the degree to which the discussion of these

issues, by at least a certain fraction of the scientific

community, is held not only...it's not a tabu, but to do it

publicly and to aggressively go out and promote public

discussion of issues is seen as kind of opening wounds and

inviting controversy, where, without such a group being

around, maybe... The fear is that in fact you'll introduce

obstacles into the process of science. I'm sure you've

woken up in the middle of the night a few times thinking

about that. What do you think about when you think about

that?

WEXLER: Well, I think that the conversation has changed

somewhat, or maybe I don't hear it as much. But in the

beginning there certainly were a number of people, and very

established figures, who felt that maybe if you didn't

mention it, it would go away, you know, that these ethical

issues impeded science and got overblown and were presented

by hysterical people with no understanding of the science,


and that by paying closer attention to them you were

exaggerating them. So that if you just, you know, don't

mention it, it will just stick it under the rug. And

certainly not to make it a part of the program itself. I

mean, that was the worst thing you could do.

Some of those people went to the... in the Cambridge

experience, and they were burnt by what they felt was real

public misunderstanding of the science and its liabilities

and dangers. They felt that they were handicapped from

doing research that was important by virtue of public

hysteria. They didn't want the public, you know, opening

these issues up.

So Jim said, and I think he felt, that you can't do

that anymore in this day and age, that this is an era in

which these issues are going to be discussed, and you're

probably better off doing it under the aegis of the same

program of supporting the science and under some mechanism

of control, rather than having the out groups do it. He

started with the in groups bringing it up. I mean, the best

defense is a good offense, so he said okay, we will look at

these issues, and if you have concerns, we want to hear

about them.

I haven't heard of many complaints from people that...

of having this part of the program. I think maybe some

people feel that we're spending too much money, or that it's

money not well spent.


And I've thought myself about it, whether or not this

is a good idea, whether we are just raking up potential

roadblocks that are going to haunt us later. If a roadblock

can haunt you, but I mean...

Q: You and I both mix metaphors. That's okay.

WEXLER: I guess my feeling is, now, that if we can keep the

focus as much as possible on the practical issues, that we

can try to avoid some of the problems inherent in that. If

we focus on services, we know that there's a phenomenal

personnel shortage. We have to deal with that. Somebody

has to deal with that. And I don't think that that's

necessarily a problem that's going to be treated by the

general public as a reason for slowing down the science.

You know, it's a delivery problem, access, developing

relevant educational materials. I mean, those are kind of

tangible, manageable...they may not be manageable, but

they're approachable problems that are a little bit

different than saying recombinant DNA is going to destroy

the world, and you're unleashing an Andromeda strain, and we

should just stop the whole thing right now.

There are other areas of the LC program which I think

are more volatile. There is a concern about people changing

the entire gene pool. And a lot of the quality questions on

radio talk shows have to do with: Are we going to have to


then, you know, have the perfect person? And, you know, the

perfect person's going to look like X, Y, Z, and we're going

to have to take those genes and... Always people say they

don't want to, you know. The people who call in are not

saying gee, this is great, you know, now I can create my own

made-to-order child, this is going to be just super. The

people who call in say I don't want to do it, but I sure as

hell don't want somebody else doing it, competing with my

kids who are just going to be average and ordinary and dumpy

and, you know, everything else. So it's not that there's

such huge pressure to go out and use this new technology

that way, it's just that people call in and say they don't

want anybody else doing it.

I think that this technology would be essentially

difficult to use that way. But, you know, I think we should

start having this conversation now about what the technology

can and can't do, and just speculate about what it might be

possible to do in the future, and do we want to make any

protections now about it.

But as long as we have a kind of concrete, reality-

oriented, practical, useful agenda that we can focus on,

that we have to do, then I think it gets away from a little

bit of the potentially inflammatory issues that the

scientists were afraid would impede the science, and that,

you know, I think could sop up a lot of time and energy.


Q: What about the opposite criticism, which is the one I'm

most sensitive to because I think I've been accused of it

recently, which is the Robert Wright view of the LC program,

which is that Jim did this preemptive strike, and that we as

a group were essentially a captive of the genome apologists

who wanted to go ahead and do the science?

WEXLER: Who accused you of that?

Q: I guess it came up most recently in this meeting that

went on...

WEXLER: ...

Q: No, but we should probably go up there. I better not

miss my limo. The interview was abruptly ended because I

had to catch a limousine into La Guardia.


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